Establishing the sensitivity and specificity of the gynaecological cancer distress screen.

OBJECTIVE: Nuanced distress screening tools can help cancer care services manage specific cancer groups' concerns more efficiently. This study examines the sensitivity and specificity of a tool specifically for women with gynaecological cancers (called the Gynaecological Cancer Distress Screen or DT-Gyn). METHODS: This paper presents cross-sectional data from individuals recently treated for gynaecological cancer recruited through Australian cancer care services, partner organisations, and support/advocacy services. Receiver operating characteristics analyses were used to evaluate the diagnostic accuracy of the DT-Gyn against criterion measures for anxiety (GAD-7), depression (patient health questionnaire), and distress (IES-R and K10). RESULTS: Overall, 373 individuals aged 19-91 provided complete data for the study. Using the recognised distress thermometer (DT) cut-off of 4, 47% of participants were classified as distressed, while a cut-off of 5 suggested that 40% had clinically relevant distress. The DT-Gyn showed good discriminant ability across all measures (IES-R: area under the curve (AUC) = 0.86, 95% CI = 0.82-0.90; GAD-7: AUC = 0.89, 95% CI = 0.85-0.93; K10: AUC = 0.88, 95% CI = 0.85-0.92; PHQ-9: AUC = 0.85, 95% CI = 0.81-0.89) and the Youden Index suggested an optimum DT cut-point of 5. CONCLUSIONS: This study established the psychometric properties of the DT-Gyn, a tool designed to identify and manage the common sources of distress in women with gynaecological cancers. We suggest a DT cut point ≥5 is optimal in detecting 'clinically relevant' distress, anxiety, and depression in this population.

Prostate Cancer Survivorship Essentials for men with prostate cancer on androgen deprivation therapy: protocol for a randomised controlled trial of a tele-based nurse-led survivorship care intervention (PCEssentials Hormone Therapy Study).

INTRODUCTION: Androgen deprivation therapy (ADT) is commonly used to treat men with locally advanced or metastatic prostate cancer. Men receiving ADT experience numerous side effects and frequently report unmet supportive care needs. An essential part of quality cancer care is survivorship care. To date, an optimal effective approach to survivorship care for men with prostate cancer on ADT has not been described. This protocol describes a randomised trial of tele-based nurse-led survivorship that addresses this knowledge gap: (1) determine the effectiveness of a nurse-led survivorship care intervention (PCEssentials), relative to usual care, for improving health-related quality of life (HR-QoL) in men with prostate cancer undergoing ADT and (2) evaluate PCEssentials implementation strategies and outcomes, including cost-effectiveness, compared with usual care. METHODS AND ANALYSIS: This is an effectiveness-implementation hybrid (type 1) trial with participants randomised to one of two arms: (1) minimally enhanced usual care and (2) nurse-led prostate cancer survivorship essentials (PCEssentials) delivered over four tele-based sessions, with a booster session 5 months after session 1. Eligible participants are Australian men with prostate cancer commencing ADT and expected to be on ADT for a minimum of 12 months. Participants are followed up at 3, 6 and 12 months postrecruitment. Primary outcomes are HR-QoL and self-efficacy. Secondary outcomes are psychological distress, insomnia, fatigue and physical activity. A concurrent process evaluation with participants and study stakeholders will be undertaken to determine effectiveness of delivery of PCEssentials. ETHICS AND DISSEMINATION: Ethics approval was obtained from the Metro South Health HREC (HREC/2021/QMS/79429). All participants are required to provide written informed consent. Outcomes of this trial will be published in peer-reviewed journals. The findings will be presented at conferences and meetings, local hospital departments, participating organisations/clinical services, and university seminars, and communicated at community and consumer-led forums. TRIAL REGISTRATION NUMBER: ACTRN12622000025730.

eHealth literacy in prostate cancer: A systematic review.

OBJECTIVE: This systematic review (PROSPERO ID: CRD42022226375) aimed to identify the eHealth literacy of men with prostate cancer, and their caregivers. METHODS: 8 databases (MEDLINE, SCOPUS, EMBASE, Web Of Science, PsycINFO, ERIC, CINAHL, Cochrane CENTRAL) and grey literature sources (e.g. Google Scholar) were searched from inception to December 2023. Articles were included if assessing eHealth/digital literacy of men with prostate cancer, or their carers', and health outcome associations. Formats such as case reports, and review papers were excluded. Records and full texts underwent independent screening and data extraction. Author disagreements were resolved by discussion. The Mixed Methods Appraisal Tool (MMAT) was used to appraise included literature, with narrative synthesis of results. RESULTS: 21,581 records were retrieved, with 7 articles satisfying inclusion criteria. A heterogenous field was characterised with lack of modern eHealth literacy measurement tools identified. Results suggest novice eHealth literacy using web 1.0 technologies. Non-validated measures of literacy demonstrate mixed results, while health outcome effects limited in scope and reliability. CONCLUSION: Prostate cancer survivors' eHealth literacy levels is likely novice, and requires further investigation. PRACTICE IMPLICATIONS: Digital technologies/resources implemented as part of patient communication practices should be vetted for quality, and tailored to patients' eHealth literacy abilities and/or needs.

Co-designing an online treatment decision aid for men with low-risk prostate cancer: Navigate.

Objectives: To develop an online treatment decision aid (OTDA) to assist patients with low-risk prostate cancer (LRPC) and their partners in making treatment decisions. Patients and methods: Navigate, an OTDA for LRPC, was rigorously co-designed by patients with a confirmed diagnosis or at risk of LRPC and their partners, clinicians, researchers and website designers/developers. A theoretical model guided the development process. A mixed methods approach was used incorporating (1) evidence for essential design elements for OTDAs; (2) evidence for treatment options for LRPC; (3) an iterative co-design process involving stakeholder workshops and prototype review; and (4) expert rating using the International Patient Decision Aid Standards (IPDAS). Three co-design workshops with potential users (n = 12) and research and web-design team members (n = 10) were conducted. Results from each workshop informed OTDA modifications to the OTDA for testing in the subsequent workshop. Clinician (n = 6) and consumer (n = 9) feedback on usability and content on the penultimate version was collected. Results: The initial workshops identified key content and design features that were incorporated into the draft OTDA, re-workshopped and incorporated into the penultimate OTDA. Expert feedback on usability and content was also incorporated into the final OTDA. The final OTDA was deemed comprehensive, clear and appropriate and met all IPDAS criteria. Conclusion: Navigate is an interactive and acceptable OTDA for Australian men with LRPC designed by men for men using a co-design methodology. The effectiveness of Navigate in assisting patient decision-making is currently being assessed in a randomised controlled trial with patients with LRPC and their partners.

Cost-utility analysis of a telehealth psychological support intervention for people with primary brain tumor: Telehealth Making Sense of brain tumor.

OBJECTIVE: To undertake an economic evaluation of a telehealth psychological support intervention for patients with primary brain tumor (PBT). METHODS: A within-trial cost-utility analysis over 6 months was performed comparing a tailored telehealth-psychological support intervention with standard care (SC) in a randomized control trial. Data were sourced from the Telehealth Making Sense of Brain Tumor (Tele-MAST) trial survey data, project records, and administrative healthcare claims. Quality-adjusted life years (QALYs) were calculated based on the EuroQol-5D-5L. Non-parametric bootstrapping with 2000 iterations was used to determine sampling uncertainty. Multiple imputation was used for handling missing data. RESULTS: The Tele-MAST trial included 82 participants and was conducted in Queensland, Australia during 2018-2021. When all healthcare claims were included, the incremental cost savings from Tele-MAST were -AU$4,327 (95% CI: -$8637, -$18) while incremental QALY gains were small at 0.03 (95% CI: -0.02, 0.08). The likelihood of Tele-MAST being cost-effective versus SC was 87% at a willingness-to-pay threshold of AU$50,000 per QALY gain. When psychological-related healthcare costs were included only, the incremental cost per QALY gain was AU$10,685 (95% CI: dominant, $24,566) and net monetary benefits were AU$534 (95% CI: $466, $602) with a 65% likelihood of the intervention being cost-effective. CONCLUSIONS: Based on this small randomized controlled trial, the Tele-MAST intervention is a cost-effective intervention for improving the quality of life of people with PBT in Australia. Patients receiving the intervention incurred significantly lower overall healthcare costs than patients in SC. There was no significant difference in costs incurred for psychological health services.

Individual and area level factors associated with the breast cancer diagnostic-treatment interval in Queensland, Australia.

BACKGROUND: Delays to breast cancer treatment can lead to more aggressive and extensive treatments, increased expenses, increased psychological distress, and poorer survival. We explored the individual and area level factors associated with the interval between diagnosis and first treatment in a population-based cohort in Queensland, Australia. METHODS: Data from 3216 Queensland women aged 20 to 79, diagnosed with invasive breast cancer (ICD-O-3 C50) between March 2010 and June 2013 were analysed. Diagnostic dates were sourced from the Queensland Cancer Registry and treatment dates were collected via self-report. Diagnostics-treatment intervals were modelled using flexible parametric survival methods. RESULTS: The median interval between breast cancer diagnosis and first treatment was 15 days, with an interquartile range of 9-26 days. Longer diagnostic-treatment intervals were associated with a lack of private health coverage, lower pre-diagnostic income, first treatments other than breast conserving surgery, and residence outside a major city. The model explained a modest 13.7% of the variance in the diagnostic-treatment interval [Formula: see text]. Sauerbrei's D was 0.82, demonstrating low to moderate discrimination performance. CONCLUSION: Whilst this study identified several individual- and area-level factors associated with the time between breast cancer diagnosis and first treatment, much of the variation remained unexplained. Increased socioeconomic disadvantage appears to predict longer diagnostic-treatment intervals. Though some of the differences are small, many of the same factors have also been linked to screening and diagnostic delay. Given the potential for accumulation of delay at multiple stages along the diagnostic and treatment pathway, identifying and applying effective strategies address barriers to timely health care faced by socioeconomically disadvantaged women remains a priority.

Disease mapping: Geographic differences in population rates of interventional treatment for prostate cancer in Australia.

BACKGROUND: Treatment decisions for men diagnosed with prostate cancer depend on a range of clinical and patient characteristics such as disease stage, age, general health, risk of side effects and access. Associations between treatment patterns and area-level factors such as remoteness and socioeconomic disadvantage have been observed in many countries. OBJECTIVE: To model spatial differences in interventional treatment rates for prostate cancer at high spatial resolution to inform policy and decision-making. METHODS: Hospital separations data for interventional treatments for prostate cancer (radical prostatectomy, low dose rate and high dose rate brachytherapy) for men aged 40 years and over were modelled using spatial models, generalised linear mixed models, maximised excess events tests and k-means statistical clustering. RESULTS: Geographic differences in population rates of interventional treatments were found (p<0.001). Separation rates for radical prostatectomy were lower in remote areas (12.2 per 10 000 person-years compared with 15.0-15.9 in regional and major city areas). Rates for all treatments decreased with increasing socioeconomic disadvantage (radical prostatectomy 19.1 /10 000 person-years in the most advantaged areas compared with 12.9 in the most disadvantaged areas). Three groups of similar areas were identified: those with higher rates of radical prostatectomy, those with higher rates of low dose brachytherapy, and those with low interventional treatment rates but higher rates of excess deaths. The most disadvantaged areas and remote areas tended to be in the latter group. CONCLUSIONS: The geographic differences in treatment rates may partly reflect differences in patients' physical and financial access to treatments. Treatment rates also depend on diagnosis rates and thus reflect variation in investigation rates for prostate cancer and presentation of disease. Spatial variation in interventional treatments may aid identification of areas of under-treatment or over-treatment.

Treatment intervals and survival for women diagnosed with early breast cancer in Queensland: the Breast Cancer Outcomes Study, a population-based cohort study.

OBJECTIVES: To assess associations between breast cancer-specific survival and timeliness of treatment, based on 2020 Australian guidelines for the treatment of early breast cancer. DESIGN: Population-based cohort study; analysis of linked Queensland Cancer Register, patient medical record, and National Death Index data, supplemented by telephone interviews. SETTING, PARTICIPANTS: Women aged 20-79 years diagnosed with invasive breast cancer during 1 March 2010 - 30 June 2013, followed to 31 December 2020. MAIN OUTCOME MEASURES: Breast cancer-specific survival for women who received or did not receive treatment within the recommended timeframe, overall and for six treatment intervals; optimal cut-points for each treatment interval; characteristics of women for whom treatment was not provided within the recommended timeframe. RESULTS: Of 5426 eligible women, 4762 could be invited for interviews; complete data were available for 3044 women (56% of eligible women, 65% of invited women). Incomplete compliance with guideline interval recommendations was identified for 1375 women (45%); their risk of death from breast cancer during the follow-up period was greater than for those for whom guideline compliance was complete (adjusted hazard ratio [aHR], 1.43; 95% confidence interval [CI], 1.04-1.96). Risk of death was greater for women for whom the diagnosis to surgery interval exceeded 29 days (aHR, 1.76; 95% CI, 1.19-2.59), the surgery to chemotherapy interval exceeded 36 days (aHR, 1.63; 95% CI, 1.13-2.36), or the chemotherapy to radiotherapy interval exceeded 31 days (aHR, 1.83; 95% CI, 1.19-2.80). Treatment intervals longer than recommended were more frequent for women for whom breast cancer was detected by public facility screening (adjusted odds ratio [aOR], 1.58; 95% CI, 1.22-2.04) or by symptoms (aOR, 1.39; 95% CI, 1.09-1.79) than when cancer had been detected in private facilities, and for women without private health insurance (aOR, 1.96; 95% CI, 1.66-2.32) or living outside major cities (aOR, 1.38; 95% CI, 1.18-1.62). CONCLUSIONS: Breast cancer-specific survival was poorer for women for whom the diagnosis to surgery, surgery to chemotherapy, or chemotherapy to radiotherapy intervals exceeded guideline-recommended limits. Our findings support 2020 Australian guideline recommendations regarding timely care.

Evaluation of the telehealth making sense of brain tumor psychological support intervention for people with primary brain tumor and their caregivers: A randomized controlled trial.

OBJECTIVE: This pragmatic randomized control trial aimed to evaluate clinical efficacy of the Making Sense of Brain Tumour program delivered via videoconferencing (Tele-MAST) for improving mental health and quality of life (QoL) relative to standard care in individuals with primary brain tumor (PBT). METHOD: Adults with PBT experiencing at least mild distress (Distress Thermometer ≥4) and caregivers were randomly allocated to the 10-session Tele-MAST program or standard care. Mental health and QoL were assessed pre-intervention, post-intervention (primary endpoint), and 6-weeks and 6-months follow-up. The primary outcome was clinician-rated depressive symptoms on the Montgomery-Asberg Depression Rating Scale. RESULTS: 82 participants with PBT (34% benign, 20% lower-grade glioma, 46% high-grade glioma) and 36 caregivers were recruited (2018-2021). Controlling for baseline functioning, Tele-MAST participants with PBT had lower depressive symptoms at post-intervention (95% CI: 10.2-14.6, vs. 15.2-19.6, p = 0.002) and 6-weeks post-intervention (95% CI: 11.5-15.8 vs. 15.6-19.9, p = 0.010) than standard care, and were almost 4 times more likely to experience clinically reduced depression (OR, 3.89; 95% CI: 1.5-9.9). Tele-MAST participants with PBT also reported significantly better global QoL, emotional QoL and lower anxiety at post-intervention and 6-weeks post-intervention than standard care. There were no significant intervention effects for caregivers. At 6-months follow-up participants with PBT who received Tele-MAST reported significantly better mental health and QoL relative to pre-intervention. CONCLUSIONS: Tele-MAST was found to be more effective for reducing depressive symptoms at post-intervention than standard care for people with PBT but not caregivers. Tailored and extended psychological support may be beneficial for people with PBT.

Prostate cancer, online health information and communication technology - Bibliometric analysis of field with research frontiers.

OBJECTIVES: The purpose of this study is to conduct the first bibliometric analysis which examines eHealth communication technologies in prostate cancer care, and the utilization of internet-based health information and communication technology by men with prostate cancer. METHODS: Original articles were extracted from the Science Citation Index Expanded (SCI-E) on Web of Science (WOS) and analyzed concerning their distributions. Quantitative guidance directed investigation of findings from previous studies and trending issues within the field. The WOS, VOSViewer and CiteSpace IV were used for information analysis. RESULTS: 302 articles were included in the final analysis. There has been a 165 % increase in productivity over the past decade. The leading country by publication was the USA (145 articles = 48.02 %). Journals which published the highest number of original articles were the Journal of Medical Internet Research (6.95 %), and Patient Education and Counseling (4.64 %). DISCUSSION AND PRACTICE IMPLICATIONS: The field of research which examines utilization and impacts of internet-based health information on men with prostate cancer is growing and diverse. Research frontiers are 'Information quality and diversity', 'eHealth literacy', 'decision making', and 'survivorship and advanced disease'. Clinicians should be aware of several significant limitations which exist within the current field of research.

Guidelines for genetic testing in prostate cancer: a scoping review.

BACKGROUND: Genetic testing, to identify pathogenic or likely pathogenic variants in prostate cancer, is valuable in guiding treatment decisions for men with prostate cancer and to inform cancer prevention and early detection options for their immediate blood relatives. There are various guidelines and consensus statements for genetic testing in prostate cancer. Our aim is to review genetic testing recommendations across current guidelines and consensus statements and the level of evidence supporting those recommendations. METHODS: A scoping review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for scoping review (PRISMA-ScR) guidelines. Electronic database searches and manual searches of grey literature, including websites of key organisations were conducted. Using the Population, Concept, Context (PCC) framework, this scoping review included: men with prostate cancer or men at high risk of prostate cancer and their biological families; existing guidelines and consensus statements with supporting evidence for genetic testing of men with prostate cancer from any geographical location worldwide. RESULTS: Of the 660 citations identified, 23 guidelines and consensus statements met the inclusion criteria for the scoping review. Based on different levels of evidence about who should be tested and how, a diverse range of recommendations were identified. There was general consensus among the guidelines and consensus statements that men with metastatic disease be offered genetic testing; however, there was less consensus in relation to genetic testing in localised prostate cancer. While there was some consensus in relation to which genes to test, recommendations varied regarding who to test, testing methods and implementation. CONCLUSION: While genetic testing in prostate cancer is routinely recommended and numerous guidelines exist, there is still considerable lack of consensus regarding who should be tested and how they should be tested. Further evidence is needed to inform value-based genetic testing strategies for implementation in practice.

Efficacy and Feasibility of Presurgical Exercise in Bladder Cancer Patients Scheduled for Open Radical Cystectomy.

PURPOSE: This study aimed to examine the feasibility and potential efficacy of presurgical exercise in patients with bladder cancer scheduled for open radical cystectomy with follow-up postsurgery. METHODS: Prospective single-group design with assessments at baseline, presurgery, and 3 months postsurgery was used in this study. Multimodal supervised resistance and aerobic exercise was undertaken 2-3 d·wk -1 at moderate intensity for a median of 3.5 wk (interquartile range [IQR] = 1.3-5.6). Feasibility was assessed by recruitment and completion rates, patient safety, program tolerance, adherence, and compliance. Lean and fat mass were assessed by dual-energy x-ray absorptiometry, physical function by a battery of tests (chest press and leg press strength, 6-min walk test [6MWT], timed up-and-go, repeated chair rise), and quality of life (QoL), psychological distress, and body image by questionnaire. Hospital length of stay (LOS) and complications were assessed by medical records. RESULTS: Thirty-seven patients were referred with 20 recruited (67.3 ± 12.2 yr) and a presurgery intervention completion rate of 80% (16 of 20). The individual median program adherence was 100.0% (IQR = 89.4-100.0) with compliance of 100.0% (IQR = 90.5-100.0) for resistance exercise and 81.8% (IQR = 55.0-99.5) for aerobic exercise. There were no exercise-related adverse events. Body composition did not change presurgery; however, there were improvements ( P < 0.05) in leg press strength (16%), 6MWT distance (8%), timed up-and-go (12%), chair rise (10%), and multiple QoL domains including mental health. Median LOS was 8.0 d (IQR = 7.0, 15.0). Postsurgery, there were declines in components of QoL and apparent body image dissatisfaction. CONCLUSIONS: A preradical cystectomy exercise program is feasible, safe, and well tolerated with improvements in physical function and QoL. Supervised multimodal exercise in bladder cancer patients before cystectomy can enhance physical and mental health potentially buffering the effects of surgery.

Severity and risk factors of interval breast cancer in Queensland, Australia: a population-based study.

BACKGROUND: Interval breast cancers (BC) are those diagnosed within 24 months of a negative mammogram. This study estimates the odds of being diagnosed with high-severity BC among screen-detected, interval, and other symptom-detected BC (no screening history within 2 years); and explores factors associated with being diagnosed with interval BC. METHODS: Telephone interviews and self-administered questionnaires were conducted among women (n = 3,326) diagnosed with BC in 2010-2013 in Queensland. Respondents were categorised into screen-detected, interval, and other symptom-detected BCs. Data were analysed using logistic regressions with multiple imputation. RESULTS: Compared with screen-detected BC, interval BC had higher odds of late-stage (OR = 3.50, 2.9-4.3), high-grade (OR = 2.36, 1.9-2.9) and triple-negative cancers (OR = 2.55, 1.9-3.5). Compared with other symptom-detected BC, interval BC had lower odds of late stage (OR = 0.75, 0.6-0.9), but higher odds of triple-negative cancers (OR = 1.68, 1.2-2.3). Among women who had a negative mammogram (n = 2,145), 69.8% were diagnosed at their next mammogram, while 30.2% were diagnosed with an interval cancer. Those with an interval cancer were more likely to have healthy weight (OR = 1.37, 1.1-1.7), received hormone replacement therapy (2-10 years: OR = 1.33, 1.0-1.7; > 10 years: OR = 1.55, 1.1-2.2), conducted monthly breast self-examinations (BSE) (OR = 1.66, 1.2-2.3) and had previous mammogram in a public facility (OR = 1.52, 1.2-2.0). CONCLUSION: These results highlight the benefits of screening even among those with an interval cancer. Women-conducted BSE were more likely to have interval BC which may reflect their increased ability to notice symptoms between screening intervals.

Acceptability of a virtual prostate cancer survivorship care model in regional Australia: A qualitative exploratory study.

OBJECTIVE: To assess the acceptability of a nurse-led prostate cancer survivorship intervention adapted for virtual delivery and tailored to post-surgical care, in a regional Australian hospital and health service. METHODS: A qualitative exploratory study using the Theoretical Framework of Acceptability (TFA). RESULTS: Twenty-two participants took part in a semistructured interview comprising men who had completed the program (n = 16) and health professionals/service stakeholders involved in program delivery (n = 6). Acceptability of this virtual prostate cancer survivorship care program was very high across all constructs of the TFA, from the perspectives of both program recipients and those delivering the program. The quality of care received was seen as superior to what men had experienced previously (burden, opportunity costs). The time afforded by the regularly scheduled video-consultations allowed men to come to terms with the recovery process in their own time (self-efficacy), and provided an ongoing sense of support and access to care outside the consultation (ethicality). Clinically, the program improved care co-ordination, expedited identification of survivorship care needs, and met service priorities of providing quality care close to home (burden, perceived effectiveness). CONCLUSIONS: Findings from this study suggest virtual post-surgical care delivered via videoconferencing is highly acceptable to prostate cancer survivors in a regional setting. Future research exploring virtual program implementation at scale and long-term patient and service outcomes is warranted.

"Hey, I'm still here!": Maintaining, managing and rebuilding social connections after brain tumour.

It is well recognized that social networks can buffer the adverse effects of chronic illness on psychological wellbeing. However, the functional impairments associated with brain tumour often affect social participation, which may reduce people's capacity to draw upon their social capital for support. This qualitative phenomenological study aimed to understand how brain tumour influences people's ability to manage, maintain, and rebuild their social networks. Participants were 20 individuals (65% female) aged 22-69 years with diverse types of primary brain tumour (50% high grade or malignant) who were on average 35 months post-diagnosis. Two semi-structured interviews, conducted three months apart, comprised a Social Identity Mapping exercise and questions exploring changes in social groups since diagnosis. Two overarching and interrelated themes emerged: engaging and connecting and then versus now. An interplay of barriers, facilitators and strategies influenced people's ability to engage and connect with their social groups, which in turn influenced whether they experienced stability; maintenance and expansion; loss and rebuilding; or loss and shrinkage of their social networks over time. These novel findings highlight the need to develop interventions that specifically focus on enhancing individuals' abilities to maintain or rebuild their social networks.

A Vanguard Approach to the Design and Delivery of Nurse-Led Survivorship Care.

OBJECTIVES: Survivorship care is an essential component of quality cancer care. Although nurses are uniquely positioned to deliver effective and efficient nurse-led survivorship care, they report that their experiences of survivorship care provision are fragmented, under-resourced, and often distressing for the patient. DATA SOURCES: Here we report the culmination of a 4-year program of research and more than a decade of nurse-led work, to improve the survivorship care experience for men with prostate cancer comprising of: (1) the evolution of a national specialist prostate cancer nursing service; (2) a nursing Delphi study to determine prostate cancer survivorship care experiences and priorities; (3) the development of the Prostate Cancer Survivorship Essentials Framework, which provides a road map for improving quality prostate cancer survivorship care across a variety of settings; and (4) the translation of the framework into nursing practice through the development of My Personal Plan, a person-centered, evidence-informed survivorship care plan. CONCLUSION: Through the leadership of a national prostate cancer specialist nursing service, the provision of a coordinated, evidence-informed person-centered survivorship care service is now achievable. This program of work has demonstrated that irrespective of the setting or mode of delivery, specialist nurses involved in the care of men with prostate cancer and their families are leading best practice through the translation of evidence into everyday clinical practice. IMPLICATIONS FOR NURSING PRACTICE: There is an urgent need to address the significant challenges that a prostate cancer diagnosis can bring, and nurses are at the forefront and lead survivorship care delivery, which includes: (1) routine distress screening and referral to tailored evidence-based psychological care; (2) the provision of person-centered care that connects to effective symptom management; (3) self-management support; and (4) signposting to additional services which extend beyond the acute care setting.

Experiences of participants in a clinical trial of a novel radioactive treatment for advanced prostate cancer: A nested, qualitative longitudinal study.

OBJECTIVES: Qualitative studies nested within clinical trials can provide insight into the treatment experience, how this evolves over time and where improved supportive care is required. The purpose of this qualitative study is to describe the lived experiences of men with advanced prostate cancer participating in the TheraP trial; a randomised trial of 177Lu-PSMA-617 compared with cabazitaxel chemotherapy. METHODS: Fifteen men with advanced prostate cancer were recruited from the TheraP clinical trial with interviews conducted at three timepoints during the trial. An interpretative phenomenological approach was used, and interviews analysed using thematic analysis. This research paper reports the results from the mid-point, conclusion and follow up interviews, focusing specifically on participants' experiences of trial participation. RESULTS: Three themes were identified representing the lived experiences of men with advanced prostate cancer participating in the TheraP trial: (1) facing limited options; (2) anticipating outcomes and (3) coping with health changes. CONCLUSIONS: Men who enrol in clinical trial of anti-neoplastic treatments for prostate cancer need targeted psychological and supportive care that includes attention to unique aspects of the experience of having prostate cancer and being in a clinical trial. As part of their trial experience, men with advanced prostate cancer need to be regularly assessed for survivorship needs, fully informed, supported and referred to services for regular care and support across the trajectory of their disease. TRIAL REGISTRATION: NCT03392428. Registered on 8 January 2018 (ANZUP1603).

Support-seeking by cancer caregivers living in rural Australia.

OBJECTIVE: Rural cancer caregivers report poor wellbeing and high unmet needs for support. This study investigates sources of support sought by cancer caregivers living in rural Australia, and factors associated with support-seeking. METHODS: Informal caregivers of people with cancer completed a questionnaire assessing sociodemographic characteristics, caregiver factors and support-seeking. Descriptive statistics, bivariate analyses and logistic regression were used to identify common sources of support and factors associated with support-seeking. Alluvial and radar plots were used to identify and describe support-seeking profiles. FINDINGS: Of 244 rural caregivers, 64% reported seeking support for themselves, 72% for the cancer patient, and 22% did not seek any support. The most common sources of support were general practitioners and online. Higher caregiver burden, higher income, caring for someone with anxiety/depression or caring for someone who has difficulty completing their usual activities were associated with seeking support from a greater number of sources. The 'No support-seekers' profile had the highest proportions of caregivers who were male, caring for someone <12 months post-diagnosis and lower income earners. CONCLUSIONS: Many rural caregivers seek support for themselves and the cancer patient, commonly from medical and online sources. IMPLICATIONS FOR PUBLIC HEALTH: Further work may be needed to reduce caregiver burden and support caregivers who are male, caring for someone recently diagnosed, and those with lower incomes.

A prognostic survival model for women diagnosed with invasive breast cancer in Queensland, Australia.

PURPOSE: Prognostic models can help inform patients on the future course of their cancer and assist the decision making of clinicians and patients in respect to management and treatment of the cancer. In contrast to previous studies considering survival following treatment, this study aimed to develop a prognostic model to quantify breast cancer-specific survival at the time of diagnosis. METHODS: A large (n = 3323), population-based prospective cohort of women were diagnosed with invasive breast cancer in Queensland, Australia between 2010 and 2013, and followed up to December 2018. Data were collected through a validated semi-structured telephone interview and a self-administered questionnaire, along with data linkage to the Queensland Cancer Register and additional extraction from medical records. Flexible parametric survival models, with multiple imputation to deal with missing data, were used. RESULTS: Key factors identified as being predictive of poorer survival included more advanced stage at diagnosis, higher tumour grade, "triple negative" breast cancers, and being symptom-detected rather than screen detected. The Harrell's C-statistic for the final predictive model was 0.84 (95% CI 0.82, 0.87), while the area under the ROC curve for 5-year mortality was 0.87. The final model explained about 36% of the variation in survival, with stage at diagnosis alone explaining 26% of the variation. CONCLUSIONS: In addition to confirming the prognostic importance of stage, grade and clinical subtype, these results highlighted the independent survival benefit of breast cancers diagnosed through screening, although lead and length time bias should be considered. Understanding what additional factors contribute to the substantial unexplained variation in survival outcomes remains an important objective.

Weight loss for overweight and obese patients with prostate cancer: a study protocol of a randomised trial comparing clinic-based versus Telehealth delivered EXercise and nutrition intervention (the TelEX trial).

INTRODUCTION: Obese men with prostate cancer have an increased risk of biochemical recurrence, metastatic disease and mortality. For those undergoing androgen deprivation therapy (ADT), substantial increases in fat mass are observed in the first year of treatment. Recently, we showed that a targeted supervised clinic-based exercise and nutrition intervention can result in a substantial reduction in fat mass with muscle mass preserved in ADT-treated patients. However, the intervention needs to be accessible to all patients and not just those who can access a supervised clinic-based programme. The purpose of this study was to evaluate the efficacy of telehealth delivered compared with supervised clinic-based delivered exercise and nutrition intervention in overweight/obese patients with prostate cancer. METHODS AND ANALYSIS: A single-blinded, two-arm parallel group, non-inferiority randomised trial will be undertaken with 104 overweight/obese men with prostate cancer (body fat percentage ≥25%) randomly allocated in a ratio of 1:1 to a telehealth-delivered, virtually supervised exercise and nutrition programme or a clinic-based, face-to-face supervised exercise and nutrition programme. Exercise will consist of supervised resistance and aerobic exercise performed three times a week plus additional self-directed aerobic exercise performed 4 days/week for the first 6 months. Thereafter, for months 7-12, the programmes will be self-managed. The primary endpoint will be fat mass. Secondary endpoints include lean mass and abdominal aortic calcification, anthropometric measures and blood pressure assessment, objective measures of physical function and physical activity levels, patient-reported outcomes and blood markers. Measurements will be undertaken at baseline, 6 months (post intervention), and at 12 months of follow-up. Data will be analysed using intention-to-treat and per protocol approaches. ETHICS AND DISSEMINATION: Ethics approval has been obtained from the Edith Cowan University Human Research Ethics Committee (ID: 2021-02157-GALVAO). Outcomes from the study will be published in academic journals and presented in scientific and consumer meetings. TRIAL REGISTRATION NUMBER: ACTRN12621001312831.